OK Maybe the AAN thought they were doing the right thing by providing a way for the public to comment. However many people were totally bewildered by the document at first, and gave up. With comsiderable time and effort, a few did come to understand it and felt able to comment. It could have been more user friendly to get the involvemnt of more people, and if we don't tell them so, how will it be different the next time?

Also the AAN is not the only group that thihnks that inlcuding representatives from disease advocacy groups (like PDF, NPF, APDA,)on commitees like these is equivalent to (or better than) including PWP. Slowly this attitude is changing, but we need to demand to speak for ourselves, at every opportunity.

Jackie Hunt Christensen had a great op/ed published in the Washington Post in June, " "I Can Speak for Myself, If You'll Let Me Do So" that powerfully explains why we need to be heard on this subject. you can read it at :
http://www.sehn.org/web2printer4.php...e_14-3.html#a3